Days after my latest infusion, I felt rejuvenated. I've been getting things accomplished each and every day, and after the month leading up to it, the difference has been hard to miss. Apparently, there is an opposite of the crap gap. I don't have a clever name for it yet, but I've been enjoying being on this side of it.
I recently read an Everyday Health article, “How to Deal With ‘Wearing-Off’ Phenomenon in MS Treatment”, by Matt McMillen. It discusses symptoms people report before their next treatment dose, an experience some of us call the crap gap. The article acknowledges that the reasons aren't fully understood and that feeling worse doesn't necessarily mean the medication has stopped working. I appreciated seeing the experience discussed, because that stretch before my infusion can take quite a bit out of my everyday life.
For me, the fatigue becomes overwhelming. I want to sleep in, and then I'm tired during the day anyway. Focusing on something feels like more than I have the capacity for. There are things I want to accomplish, but wanting to do them doesn't supply the energy or concentration to get through them.
That gets difficult when you work full time. The work is still there, whether you have the capacity for it or not. I see things piling up while I'm struggling to focus on what's already in front of me. Knowing what needs to get done and being able to do it can feel very far apart.
At home, I feel it too. I don't contribute the way I want to, and sometimes I don't even have the energy to engage with Whiskey. If you've spent any time here, you know how much that dog means to me. It's difficult to explain how you can care so much and still feel too exhausted to participate.
Then there are the errands. I've had times when just getting from the car to the store door has been tiring, and mind you, that's with the handicap placard. We haven't even started shopping yet. There's a whole store on the other side of that door, and I'm already feeling the effort it took to reach it.
I've mentioned this to my MS neurologist before, but I've come away feeling brushed off. Maybe they hear it all the time. I don't know. I also brought it up with my GP during my annual appointment this year. So far, I've been left with the feeling that there isn't much to be done, which is frustrating when the impact follows you through work, home, and an ordinary trip to the store.
Reading about it doesn't solve that, but it does give me something to point to when I'm trying to explain the pattern. I'd like the conversation to include what that fatigue actually costs me during the day, because “I'm tired” doesn't quite cover it.
nd then, days after this infusion, I felt rejuvenated. I can't explain exactly why I felt so different, but I noticed it in what I could get done. After struggling to keep up, being able to accomplish things day after day has felt wonderful.
I'm still living with MS. But right now, I have more capacity to take part in my own life, and I'm enjoying that. Getting work done, contributing at home, having some energy for the things I care about. Ordinary stuff, really. After a month when ordinary felt like a lot, it's felt like getting a little of me back.